The girl who saved and transformed more lives than any other organ donor

The girl who saved and transformed more lives than any other organ donor

Friday, 08 Sep 2017

NHS and Blood and Transplant has identified the donor who saved or transformed the most lives ever through organ donation.

Jemima Layzell, who died aged 13 of a brain aneurysm, is the only recorded donor in the UK whose organs were transplanted into eight different people. (1)

Her family are speaking about her donation to promote the extraordinary power of organ donors like Jemima during Organ Donation Week, September 4 to 10.

Jemima, from Horton in Somerset, a pupil at Taunton School, died in March 2012 at Bristol Royal Hospital for Children.

Her unique status has only just been recognised after NHS Blood and Transplant checked historical donor records for Organ Donation Week 2017.

NHS Blood and Transplant has records of 35,707 deceased organ donors but no other donor has helped as many different people through solid organ donation. (2)

Up to nine people could be theoretically transplanted through an individual organ donation though NHS Blood and Transplant does not have records of anyone who has helped that many people through organ only donation. (3) Jemima is the only person whose organs were transplanted into eight different people. The typical donor enables 2.6 transplants. (4)

Jemima collapsed during preparations for her mum’s 38th birthday party and died four days later.

Jemima donated eight organs. Her heart, small bowel, and pancreas were transplanted into three different people. Two people received her kidneys. Her liver was split and transplanted into a further two people. Both lungs were transplanted into one patient.

The eight different recipients included five children. The organs went to transplant centres in the North East, Midlands, South East and London.

Mum Sophy Layzell, 43, a drama tutor, is married to dad Harvey Layzell, 49, the managing director of a building firm.

Sophy said: “We knew Jemima was willing to be a donor following a conversation about it a couple of weeks before her unexpected death.

“The conversation was prompted by the death of someone we knew in a crash. They were on the register but their organs couldn't be donated because of the circumstances of their death.

“Jemima had never heard of organ donation before and found it a little bit unsettling but totally understood the importance of it.

“We found the decision hard but we both felt it was right and we knew she was in favour of donation.

“We had no idea Jemima was the only person who organs were transplanted into eight different people until NHS Blood and Transplant told us. Everyone wants their child to be special and unique and this among other things makes us very proud.

“Everyone wants their child to be special and unique and this among other things makes us very proud.

“Shortly after Jemima died, we watched a programme about children awaiting heart transplants and being fitted with Berlin Hearts in Great Ormond Street Hospital

“It affirmed for us that saying ‘no’ would have been denying eight other people the chance for life, especially over Jemima’s heart, which Harvey had felt uncomfortable about donating at the time.

“We feel it’s very important for families to talk about organ donation. Every parent’s instinct is to say no, as we are programmed to protect our child. It's only with prior knowledge of Jemima's agreement that we were able to say yes.

“Jemima was lovely - clever, funny, compassionate and creative – and we feel sure she would be very proud of her legacy.”

Sophy, Harvey, and Jemima’s sister Amelia, aged 17, now run The Jemima Layzell Trust, which helps young people with brain injuries and also promotes organ donation.

Sophy said: “Jemima’s motto, 'Live Love Laugh', runs strongly through her charity's ethos. As a donor family it's incredible to think of the new branches Jemima's tree of life has grown.”

NHS Blood and Transplant is sharing Jemima’s story to help inspire more people to tell their families they want to donate because a deadly shortage of donated organs is costing hundreds of lives every year.

Last year, 457 people died waiting for a transplant, including 14 children. There are currently 6,414 people on the transplant waiting list including 176 children. (5)

Anthony Clarkson, NHS Blood and Transplant Assistant Director of Organ Donation and Transplantation, said: “Every donor is special and Jemima’s unique story shows the extraordinary difference a few words can make.

“Hundreds of people are still dying unnecessarily waiting for a transplant because too many families say no to organ donation.

“Please tell your family you want to donate, and if you are unsure, ask yourself; if you needed transplant would you accept one? If so, shouldn’t you be prepared to donate?”

(1) A handful of other donors have donated eight organs. However in the other cases either several organs went into multi-organ transplants so that fewer than different eight people were helped in total, or some organs were donated but were later found not to be suitable for transplant.

There are many donors who have helped more than eight people when tissue donation is included. Tissues include corneas, heart valves, skin and bone. Tissue donation is not classified as solid organ donation and tissue donation and transplantation is usually not lifesaving. Jemima’s corneas were also donated.

UK Transplant Registry records for people who had donated very high numbers of organs were extracted by the NHSBT statistics team on July 20, 2017.

(2) As of 31 August 2017. UK Transplant Registry records of donors go back to 1962. Not all organ transplants are recorded on the UK Transplant Registry prior to the Human Organs Transplant Act in 1989.

(3) The maximum of nine organ transplants for nine different recipients would be heart, pancreas, bowel, both kidneys, lungs split for two different recipients, and liver split for two different recipients.

NHS Blood and Transplant is a joint England and Wales Special Health Authority. We are responsible for ensuring a safe and efficient supply of blood and associated services to the NHS in England. We are also the organ donation organisation for the UK and are responsible for matching and allocating donated organs.

We are an essential part of the NHS and take pride in saving and improving lives by making the most of every voluntary donation, from blood and organs to tissues and stem cells.

Our work would not be possible without our donors - ordinary people doing extraordinary things by saving and improving the lives of others.

It is quick and easy to join the NHS Organ Donor Register. Visit www.organdonation.nhs.uk or contact our 24 hour a day donor line - 0300 123 23 23.

The register records your decision on whether you want to donate your organs and/or tissue after your death to save and improve the lives of others. It is used by authorised medical staff to establish whether someone has registered an organ donation decision.

Letting your family know your organ donation decision will make it much easier for them to support what you want.

Every day across the UK around three people who could have benefited from a transplant die because there aren’t enough organ donors. We need more people to agree to organ donation

Anyone can join the NHS Organ Donor Register, age and medical conditions are not necessarily a barrier to donation.

One donor can save or transform up to nine lives through organ donation and transform even more by donating tissue.

There is a particular need for more black and Asian organ donors. People from Black and Asian communities have a higher incidence of conditions such as diabetes and certain forms of hepatitis, making them more likely to need a transplant. Black, Asian and Minority Ethnic patients make up a third of the active kidney transplant waiting list. Although some are able to receive a transplant from a white donor, for many the best match will come from a donor from the same ethnic background. Black, Asian and Minority Ethnic donors are needed to improve the chances of these patients getting the kidney transplant they need.

Whilst there may be some individual concerns relating to religious or cultural practices, all the major religions support organ donation.